Estabr, welcome to the forum! I am so sorry that your significant other has been diagnosed with liver disease. It is important to know what caused this. Alcohol, hep C, autoimmune hepatitis?
The first thing he should do is to get a referral to a hepatologist (liver specialist.) Even GI docs don't have the expertise that hepatologists do regarding liver disease. You don't say where you are located. I know that some states are sorely lacking in these specialists.
I am not very impressed with the new primary care doc. A fever is never "normal," but is an indication of infection somewhere in the body. However, I know that few primary care docs will accept Medicaid, so it may be difficult to find another one in your area. In general, primary care docs don't know much about liver disease.
Also, weekly drainings are dangerous. Those alone expose him to infection. Make sure he always gets the albumin with them. He really should not be getting them more than every two weeks. A TIPS procedure is something to be discussed with his GI docs and his hepatologist when he gets one. While this carries some risk, it also eliminates the drainings and ascites. If he is on Lasix alone, he should also be taking a potassium pill. Usually, Aldactone will be prescribed along with Lasix. He should be following a low-salt diet to prevent fluid retention. He might also be placed on fluid restriction.
Has the possibility of transplant been discussed?
I suggest you read the info in the folder at the top of the page entitled Hepatitis Resources. (It deals with liver disease, not just hepatitis.) That will give you an idea of what to expect. Also read some of the older posts for information. Do a search for ascites, infection, ESLD.
If you have any specific questions, please feel free to ask. Someone here should be able to answer them.
Finally, this is a very stressful disease for caregivers to deal with. Please don't forget to take care of yourself.
Post Edited (hep93) : 8/28/2010 12:53:24 PM (GMT-6)
It will take a while for his liver to regenerate. Also, he undoubtedly has cirrhosis (which is scarring of the liver) and the part that is damaged will NOT regenerate. I'm so glad he has stopped drinking. That's the very best thing that he can do for his health. The danger is if he starts feeling better and drinks again. That could spell disaster. In order to be evaluated for a liver transplant, he would need at least 6 months of documented attendance at AA or alcohol counseling (depending on the transplant center.) When he is stabilized somewhat and starts feeling a little better, he really should attend AA. He can make up some sort of form to document meetings he attends and the dates, to be signed by the chairperson. That and blood work should suffice. That way, if he needs a transplant in the future, he will have that solid attendance to back him up.
Yes, when things start happening they happen FAST. Be sure to get copies of all his CT scans, blood work, etc. Sue can tell you about the infamous 3-ring binder. This can be invaluable if he has to go to the ER, and also in tracking the progression of the disease. Keep a watch on his BUN and creatinine levels to make sure his kidneys aren't going bad, too.
You will receive a lot of information here, although you seem to have done a good job on your own thus far. You will also have a lot of empathy and support from folks here who have been or are in your shoes.
Post Edited (hep93) : 8/30/2010 2:59:43 PM (GMT-6)
I believe that was Sandi/Arneeb who answered you above, in addition to me. Anyway, it does seem that you are very much on top of things as far as investigating liver disease, TIPS, etc.
Has he ever had a liver biopsy? That would definitively show the extent of damage. I don't feel that it is doing the family any favors to "sugar-coat" things for them. At least one of them should really know what is going on. He very well could recover, but at this point he is a very sick man.
Take care and continue to keep us updated.
Sandi, the problem with waiting to apply for SSI/SSD is that they pay from the time one applies...not from the time one stops working. So you would be losing out on all that back pay if you wait. Since estabr's b.f. was noted to be TERI, his case should be approved fairly quickly.
Diane and Dave, that sounds like a good standard reply...and true. It takes time to know whether his liver will recover and how much.
All of us here are pulling for you!
Mary, welcome to the forum and thank you for your input! Glad to hear that you are doing so well now.
Sue, sorry I attributed the use of the 3-ring binder to someone else. I've corrected that post.
Thanks for your help, as always.
Diane, I still maintain that weekly drainings are dangerous! Try to find out if they can be stretched to every 2 weeks. And remember he needs the albumin, too! It does make me feel better to know they are using ultrasound guidance.
Also, remember to get that referral to a hepatologist!
Diane, a GI doc can do a liver biopsy. My first one was done by a gastroenterologist.
If you could get him hooked up with a hepatologist, you could discuss the TIPS procedure. It seems like this would be something warranted in his case, but the risks would need to be considered.
Please continue to keep us updated on Dave's progress.
Estabr, it's good to hear from you. First of all, I'm surprised that nobody has suggested stopping (or at least decreasing) the BP meds for the day before and/or the day of drainings. That would seem to be common sense.
Regarding the TIPS procedure, the liver would still be filtering toxins. They are just creating a shunt in the liver between the portal and hepatic veins. Creation of the shunt decreases the portal pressure and diminishes the ascitic fluid. Being drained every week is nearly as much of a risk as the TIPS. So I hope his doctor will learn more about this. Is your SO seeing a hepatologist? I think the management of his liver disease is really beyond the scope of the PCP.